NF
-
Why Neurofibromatosis Is Still Not About the Tumors
.
Today, May 17 is Neurofibromatosis Awareness Day. Not a day to celebrate, but a day to communicate. A day to declare the horrible, ugly symptoms of a disease that makes people prisoners in their own home. A disease that turns heads while the sufferers must hear the vile insults shouted from across the room. There,…
-
Neurofibromatosis: A Very Ugly Disease Which Affects Very Beautiful People
.
Back in 1997, my family and I sat inside the neurologists’ office at the Children’s Hospital of Philadelphia (CHOP) and waited patiently for the results of my son’s global medical evaluation. There were tests to order more tests; cognitive, physical, neurological, biological, and psycho-educational assessments were performed. We were hopeful for answers.…